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Saturday, December 7, 2013

perfect parker

Many of my posts have a lesson. I dance with words until life is revealed. I look on the bright side. My glass is usually half full. The sun will come out. Blah blah blah. That's the real me though. Why would I choose to be sad, I wonder? But right now it feels like sad chose me.At 5:30 on Friday, a school district Psychologist and our Early Intervention Teacher were just leaving the house. A long week of therapy over. Evaluations were scheduled over the next 3 months to confirm that Parker has autism. In Central California, these things are done right before a child turns 3 years old. And I am not okay.And last night a years worth of WHY ME broke the damn, as forceful and angry tears splashed down my face. Eyes swollen and red. Mascara long gone. I'm hopeful I'll just stop breathing so it won't hurt so bad -because right now- it hurts. It hasn't hurt this bad since I knew without doubt that Parker was following in Grey's steps. Parker has autism. Parker has autism. I say that out loud and I'm certain- something is bleeding. A pain that tastes like metal and feels like a herd of elephants on my chest. A pain that lingers. A pain that never got a chance to heal before being ripped back open again. Unbearable. All these feeling can't fit at once underneath my skin. Something has to burst to make this unbearable pressure go away. Once was too much. Twice is unfathomable. I can't believe I have to sit in a small room and hear those fucking words in the same order again. Your son has autism. They don't let you put your hands over your ears and hum and rock back and forth until they finally just walk away.I want to go to sleep and wake up in the past - when it was just Michael and me and Jack the dog. Loving was easy then. Loving more than anything in the world is on its own spectrum- and on the opposite side of this gorgeous life-sustaining, mad, crazy love is pain. Hot unbearable suffocating pain.I want to be mad at God, but really- it wouldn't make any difference. It won't help anything. This is my story to live, we are only given one. We don't even have to like it. Some of the details are in pencil and some are carved in stone. Autism is in stone.But God- I'm ready for something really Fricking amazing to happen. Big time amazing.I worked so hard to be good after Grey. To breath every single day- up to 20,000 times a day in fact- each one taking exuberant effort. I ate meals without tasting them. I took showers because I had to. I wore a big sweat shirt to hide. I needed to feel normal - so I did things that normal people did in the hopes that the feelings would someday come back around.And slowly the feeling came back into my limbs. I figured how to exist with uncertainty. I figured out how to exist with pain. And in microscopic amounts- the pain went away. Not all of it- not forever, but it went away. Life was good again.It will be good again. Hopefully sad will stop choosing me. I will do what I do best- live in the day...not in the forever. I debated writing all of this. It isn't cathartic or healing as one may suspect. It makes it feel too real. It makes me feel too vulnerable- and I will probably feel stupid or exposed after I send these words out into the world. But I want to be authentic. I want to jump freely, without thought or control- so at the end of this I will hit save and publish. And now you will help me too. This blog has always been a two way street. Your words matter. The official diagnosis won't come until February or March- and I'm going to need you then too.He's so amazing it hurts. I'll take him any way I can get him. Today I wore red lipstick all day long. Dubbonet by MAC. The nicest lady at the mall put it on me without realizing that she was helping to change my life with just a little swoop of color. I've never worn red before-- I'm not really a red lipstick type of girl. But today I was. I needed to be a new girl. One who has the strength to handle this new life.Love,ChrissyCome say hello on Facebook. We can jump and drink wine.

Parker is still Parker and he is beautiful. You are still you and you are beautiful. You started down this road with Grey (who is also beautiful) and now the journey continues. Ask for help when you need it. Use all the available resources. Cry when you need to cry and write your feelings out. But most important of all, love those boys with your whole heart because they are, indeed, amazing.

All I can say are things you already know: you have a community that cares; brighter days are coming; the word itself doesn't change anything and your wonderful guy is still your wonderful guy; it's okay to be sad sometimes; remember to breathe; we can do hard things. I wish I had something else to offer, but in time I hope these truths will help you, because I do know it's really hard right now and I will be thinking of you and sending you comfort.

Yesterday my three year old had his evaluation with our public school early intervention team. I already knew it would not be fun--they would ask me the list of questions--you know the ones I am talking about--where the answer is almost always no. I told myself that I would be ok with that and I was. What was not ok, was when the Psychologist looked at me and said you probably think that your son is being affectionate when he comes over and rubs on your face, but he is actually just looking for a physical stimulation. I am not sure why he had to take that from me. I came home and ate two pieces of cold pizza out of the fridge and at least 6 oreos, had horrible reflux, laid in my bed and felt sorry for myself for 10 minutes--then got up and kept on trucking. It helps me to read your writing every day and know that I am not alone. Hang in there! You can do this!!!

That picture of Parker is the most heartbreaking, beautifully poignant portrait. Your fight to be fully present for both of your little guys is both humbling and inspiring. Thank you for sharing all of the emotions so honestly. It is a gift to all of us and, though it solidifies a reality you don't want, I hope that eventually it's a therapeutic record of the presence of God through it all. Praying for all of you.

Good for you for sharing with so much honesty. The truth is...this stinks. This shouldn't be happening. It is not fair or right. What is going on....why your kids ? Why my nephew ? Why my friend's son? Why any child or parent ? I get only a fraction of your pain...small fraction and my heart hurts. Keep writing...we are here. The more that listen...the more attention. ..the better chance we have to help educate. You have a gift...a gift of writing. Keep sharing...you are an amazing mommy .

I hear you Chrissy and I am so grateful. Everything about this space is beautiful - your photos, your words, your boys, you. Even your pain, your heartache. I am better for having known you in this way. Thank you.

Dear Chrissy I know exactly how you feel and right now, As I write this, I am pretending we are speed hiking up and down the mountains near my house, because that is what my fellow moms of kids with super powers and I do here...we walk and talk, with autism, and in that supportive and powerful place, we shift things. When my first son was diagnosed with autism I think I was mostly surprised and shocked. When my second son was diagnosed with autism at a meeting, on his 3rd birthday, I was overcome by sad. I didn't know that that was what it was actually, until I read one of your old posts that talked about "the sad". Thank you so much for giving that state such a simple, but truthful word, because I had a million other words I thought I was struggling with. And that is what it has often cycled back to: simple truths, simple living. simple being, and the beauty of that mental and physical place. After two diagnoses, I went on new adventures. I did things I never would have done, without that second "sentence". I did an equus workshop and learned about the power of non-verbal communication through horses. My thoughts, my beliefs, my educated mind....were all blown wide open! It was so exciting to be a student again! It was amazing to expand and grow and dive into realms that wow...I never would have been inspired to experience without these boys. And I learned things that only enhanced my relationship with my children. From there it was on to Byron Katie, Son-Rise at the Option Institute, meditation, and lately...a fascination with minimalism and tiny houses (ha ha) but this all comes from the simple truths that are the greatest gifts my children have given me...that because of their autism and where I needed to go to learn things...I know now and appreciate the simplest of things. I am a student again, devouring books, going to workshops, meeting new friends, excited about new adventures and not afraid and it is the best, best, best place I could ever grow to . I love just being with my boys. I watch them and really pay attention to what I am seeing, and I appreciate it, deeply. We never have to speak. I love to play with them, I love to be as silly as I can be and be so in touch with my inner child. It is fun and creative and I feel alive. With them. And in those places it doesn't matter what labels they have or if they are like/different from "typical kids", because what matters is that we understand and accept and are creating happy. We are committed to happy. We will go on another adventure to find happy if happy tries to hide. We will shout, "Found you! Silly Goose!" So much love to you and your family

That was a hard day for me as well. My second child with autism. I didn't want this for him, and, selfishly, I didn't want this for me either.

Some days its so easy to see how beautiful and amazing my boys are, and days like this its hard to see beyond the struggle. Time will pass and things aren't magically going to be sunshine and rainbows, but its not always going to be this hard.

I am a school psychologist, and every time I go into meetings and have to say words that nobody wants to hear it is hard for me. Hearing your perspective on things has helped me to see the other side of the table. Your blog really has changed things for me, with my own kids and with the families I serve. Way to change the world one mom and one school psychologist at a time! Thanks.

I have two girls. Kaylie is 5 and Macy is 3. They both have Autism. Not sure why, but their diagnosis(es) did not make me that upset. I think it was because I had followed Carepages of kids who were dying of terminal illnesses. I thought "Heck, it's just Autism". I don't have to watch them suffer physically, they're just a little behind their peers. I had perspective from reading those pages and realizing that it could be so much worse. In the past 3 weeks, I have gained even more perspective. I found out that our son, Blake, who I am 22 weeks pregnant with, has Trisomy 18 (he has three #18 chromosomes, instead of two). It is a fatal condition. The chances that he will make it to birth are 1 in 6,000. He has several serious anomalies that if he does miraculously make it to birth, he will die a short time later. I will be happy having him just a few minutes/hours/days.

I pondered whether or not I should share this here, as I don't want you to think for one second that I am discounting your feelings of sadness with Parker's diagnosis. You have every right to have any feelings you have about it. I just want to tell you that my life got much better once I started looking on the bright side of things and realizing that things could be so much worse. What I am dealing with now is probably one of the worst things I could imagine. I will get through it, with God's help. I will be happy again one day. Heck, I am somewhat happy now most of the time. It surprises me as I thought if something like this happened to me, I would stay in bed and cry all day long but God is good and is carrying me through this. I know my son's life has a purpose and I know God will take care of him when He calls him home until I can see him again.

I understand that Autism is hard at times but it is also very rewarding at times. I celebrate milestones that most parents wouldn't even notice! Your boys are SO beautiful. They will be OK. You will be OK. Take all the time you need to grieve the dreams you had for them and to create new dreams.

There is a poem that I read shortly after Kaylie was diagnosed that I would like to share. You've probably already seen it but just in case you haven't...

"Welcome to Holland" written by Emily Perl Kingsley

"When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland."

Chrissy, Thanks for sharing this. I have a 6 year old son with autism. During the process I felt that I knew for sure that an autism diagnosis would be the outcome. I found out in an email from the psychologist. Although I was accepting it felt so different than I thought it would. It was so heartbreaking to say out loud, to tell anyone at first. My other son who is now 3 received early intervention services but has no autism diagnosis. He has aged out and does not require them any longer. Since my son Luke has started kindergarten(in an autistic support class) you would not believe the change. One day you will be at a place where things are a lot easier to manage. The changes that have occurred over the year are truly amazing. He can answer a few simple questions now, his attention has increased greatly and he has a real desire to share things with us suddenly. A year ago it was often a struggle to capture his attention. I have a 10 month old daughter as well. Your children are beautiful. Looking forward to reading more about your journey. Thank you for being so honest. I know you do your best to keep a positive attitude and it is hard in a time like this.

Chrissy my heart is breaking for you too. But I know you will bounce back. Your infectious positive happy energy will rebound within you. After all, he's your Doodle! And he's beautiful and lovable and so very precious.

Crissy-I know the pain. The evaluation days are the worst. As you sit and BEG your child in your head to perform perfectly-please, just complete the puzzle or stack the blocks. And the results. They are even worse. In hindsight I can see the testing as a beginning of sorts, the beginning of the process of living with the grief for your child and family. The beginning of truly understanding where your child is and where he or she should be. You have such an amazing way of expressing your love for Parker and Greyson that your readers can feel it themselves. You love completely and I'll bet you grieve the same way. I will be here with you as you travel this difficult road once again.

It is okay to feel sad because this is sad. Wishing away sad or feeling bad about feeling sad adds frustration and guilt. So if you're sad, be sad. Sometimes, allowing it is the first step to it lifting away. Parker and Grey have beauty and you capture that beauty and show it to others. There is a lot of beauty, too, in a Mommy like you. Breathe in, breathe out. -Lisa

Chrissy, You're kids are Bea.U.TI.FUL!! You already know that. Even if writing this post didn't take away your sadness or frustration or even ease it, maybe just knowing other people are here who care about you and your boys may help a little. I honestly cannot imagine going through what you are facing, but just want to say I care. ((((Hugs)))).

Chrissy, Thank you for being authentic and real. I have a little girl with a chromosomal disorder and I had to stop reading most blogs because of the "overly happy" outlook on life. It's fine most of the time, but just once I just wanted one other person to say they were angry too. I appreciate your line about wanting to wake up in the past. It has nothing to do with not loving the children we have, but people don't seem to understand that kind of statement and I'm thankful you said it. hugs to you.

I am not a mother so I think I can't fully understand how much that might hurt. But I have realized since I started reading your blog that you are strong, determined and brave. I know you glass will be half full again soon. (I have to say you kids are beautiful!!!) Big hug!

Thank-you for being authentic. I can so connected to the sadness. Like you, I feel most of the time I have figured out a way to deal with it and be truly happy. Then there is a moment or event and the sadness sweeps over me and is back and seemingly heavier than ever. As you know, the sadness doesn't stay forever. I hope it has a short visit this time. Sending love your way.

Your sons are lucky to have you in their lives: you are a great mom, and you have every right to be sad. It took me a year to not be sad anymore and sometimes it still hits me...at random times or places. Thank you for having the courage to share. Christen

Oh Friend. I'm not going to try to fix or fine this. It sucks, right now. We both know you, Michael and these beautiful boys will be terrific - but right now it's not. My heart aches for you. Sometimes you gotta wonder how much can one girl take??! I am truly sorry. It's hard & seems so unfair.When you are ready to rejoice, again, at the beauty and perfection of your boys - I will be here as well. But it's ok to feel the sad, for now. How can we enjoy beauty if we've never known pain?Sending you sooo much love! I will keep you in my heart and pray the happy finds its way home to you soon.<3 xoxoxo Jen

It took me MONTHS to say the words, "My son is deaf" before I could do so without breaking down in tears. I actually wondered to myself if I would ever get to a point where I wouldn't be embarrassed, sad and angry over it. It comes.....as you know, it comes. One day you realize that it's become your normal and you couldn't imagine life any other way. Getting there? Hurts like hell though.

Hello Chrissy, I first saw your blog several months ago on the front page of the Fresno Bee. Greyson's story caught my eye because my first real job ever was working with children and young adults with super powers. It was really, really emotionally draining (from the constant worry of making sure I was protecting my beloved clients as their eyes, ears, and voice) and also extremely emotionally-fulfilling as I saw my clients grow in leaps and bounds over the years. I would have to say that I loved working with children with autism the most because of their spunk, quirkiness, & just plain awesomeness. Never let experts place limits on what your children can do in life and never take all they say as fact. To this day, I refuse to acquiesce to the experts' belief that certain behaviors such as arm flapping & face rubbing are "maladaptive" and "should be corrected." We haven't even begun to understand the function of the human brain in all its complexity so we really can't place labels on body language. My beautiful clients often used arm flapping to express excitement (over their favorite computer games & tv shows), face rubbing to show love, and impromptu head locks to give hugs. Where I worked, we never told them they needed to stop or that this was wrong, we just tried to help them develop new ways to communicate. In the near future in Fresno & Clovis, I hope to see more of the community inclusion programs that exist in the Bay Area. For example, I also enjoyed being an activity leader in the inclusion program of a Bay Area public summer camp. Imagine 50 kids of all abilities mixed together-going on field trips, doing arts & crafts, swimming-a place where all kids can be just kids and play and grow together. I really hope something like this comes to our local recreation centers soon!!

And in the longer term, I would love to see a rehabilitative care home much like the one- http://www.buildhouse.org/ where I first learned about all the different super powers in the world. To my knowledge, there's nothing like it between Fresno & Los Angeles.